From Jenn Vesperman:

Think about how you feel when you get a flu, all sniffly and sneezy and with a headache but when you’re lying down you feel kind of ok, you know you could get up and straighten that picture that’s hanging crooked, and while you’re up you could wash all your hankies that you’ve used while you had the flu, and hell with it, you could go to work today. You’re not feeling that bad, really…. …. and then you stand up, and immediately reach for the arm of the couch to keep from falling over. You can’t even stand.

Now imagine having that sort of flu – every day for ten years.

From Carol:

Imagine how a privileged nineteenth-century lady would have felt after entertaining her peers all afternoon in her crinolines and curls. That what my worst pre-CFS fatigue could be compared to.

Now imagine a miner; a miner who has put in a 12 hour shift pounding on rock with a pickaxe. As he leaves the mineshaft for home, he is run down by a large piece of machinery. Before he comes to, he sucks in a few lungs full of the machine’s exhaust fumes.

How that miner is going feel when he regains consciousness could hardly be described as fatigued. I know. I often feel like that. Chronic Fatigue Syndrome. Give me a break.

Additions to this page are welcomed! If you have any descriptions that might fit on this page, please contact me or leave a comment so I can add them.

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This article was originally published at Describing Fibromyalgia and CFS and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I avoided my high school reunion.

I don’t like social occasions much anyway. I hate getting tired so quickly, I hate having to avoid smoke. I hate all the ‘good advice’ about CFS, if I explain why. I hate the weird looks if I don’t.

But that’s not why I avoided my high school reunion.

From time to time I meet someone who I knew years ago, but still while I was sick. The response seems to be ‘oh, are you still sick?’ followed by ‘so what have you been doing?’

I’ve been being sick, dammit.

I hate that.

But these people knew me when I was well.

I just don’t think I could possibly cope with being sick in their presence. I don’t think I could cope with knowing what they’ve been doing. Seeing the doctors, the lawyers, the people who’ve got kids. The ones who’ve divorced. The ones who’ve remarried.

Seeing people with lives.

I think it’d kill me.

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This article was originally published at Reunions and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

9:00 am	Wake up
9:30 am	Breakfast, get dressed
10:00 am	Gymnasium

Doesn’t sound much like a typical morning for somebody with severe CFS and fibromyalgia? It’s mine, four mornings every week.

… Or at least, it was for a while. I wrote that article about six months after I first came out of Cedar Court. Cedar Court is a private rehabilitation hospital in Melbourne, Australia. It doesn’t specialise in CFS or have a special CFS “program” but they do claim to understand the disease and be able to basically get you back to normal functioning if you try hard enough and do what they say.

I’ve been there five times now. The first time was just after a long period of being crashed to the point of being bedridden, and it helped me. I jumped from about 30% to about 55% on Jill Moss’s Ability Scale. I was thrilled! This was the cure I had been looking for for years! I was jubilant. Strong enough to move out of home on my own for the first time. And I believed all the rehab specialists’ opinions that if I kept going to the gym I’d keep improving.

There’s a word for this thinking, and I think it’s “naieve”. Or it might be “over-optimistic”. Or a combination of the two. Point is, it didn’t quite work out that way.

I moved out of home, found the nearest gym and started diligently going there six mornings a week. I felt stupid lifting half kilo weights beside the muscular guys lifting my own bodyweight and more. I couldn’t even work most of the machines because their lowest weight was more than I’d gotten up to on the Cedar Court machines. I went back to the physio and we collaborated and designed a new program of stuff that I could manage to do at the gymnasium, like riding the recumbent bikes for 3-5 minutes, doing heel raises, and so on. I went there for about 3 months and my numbers – and heath – improved not one iota. It was pretty discouraging.

I think the fact was that while I was living by myself, I needed some of my energy for stuff like shopping and keeping house. I could no longer devote 99% of my energy to the struggle of getting stronger as I had done while I was in Cedar Court hospital and then later at home when my parents were supporting me in my rehabilitation efforts.

At the start of the next year I went back to Cedar Court for a “top up”, thinking this might kick-start my recovery again. This is when I found out something very insidiously nasty about the Cedar Count program: While you are improving, the physios and OTs and rehabilitation specialists are 110% encouraging and just plain “there” for you. While you’re stable or slipping backwards, they melt away and it’s your fault for not trying hard enough, or for not wanting to get better, or for not being motivated, or for any number of other reasons. So they get the credit for all the good stuff and you get the blame for all the bad stuff.

I had one physiotherapist who, at the start of my first stay stay when I asked her about her treatment success and failure percentages, said that she could help every single patient who wanted to be helped. When I stopped improving on a later visit she sat me down very seriously and told me point-blank that I should “have a good think and examine my motivations for being here”. I guess once I wasn’t being helped any more, I automatically fell into the “didn’t want to be helped” category. I found incidents like this very upsetting and difficult to deal with.

But because I was deteriorating more and more, now down from a high of 55% to a low of under 20% on that same scale, I kept going back. Hoping each time that whatever flaw in me that they saw and I didn’t see could be corrected and I could recover.

This continued for five visits, each visit becoming more useless and torturous than the last. The final straw came when, at the end of my last visit there, my rehabilitation consultant wrote a letter back to my treating doctor. Note that the rehab consultant had never seen or even asked to see any of my blood test results etc. He wrote: “There is no physiological [in-the-body] reason why Rebekah should not be functioning at a higher level”. That was the last straw. Because he could not fix me, it was all in my head.

I gave up on Cedar Court that day. I’m never going back.

I think the assessment I wrote in the first article was true – my first Cedar Court trip caught me at a period where I was coming out of a prolonged crash and helped me to recover muscle strength/stamina which I had lost but had the capacity for. I don’t think they ever touched my underlying CFS and other diseases, or actually did anything except rebuild muscle that had wasted while I was bedridden.

I’m still getting worse. I’m still doing my physio and occupational therapy because I still believe it’ll keep my muscles as healthy and strong as the CFS will let them be. I still believe that there might be another time when it suddenly starts helping more, like it did during my first Cedar Court stay. But at the moment, it’s not working. I guess it might be slowing my decline, but it just feels like hard, useless work.

On the other hand, it’s all that I have.

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This article was originally published at Experiences In A Rehab Hospital: The Followup and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

Please also read the followup article Experiences in a rehab hospital: The Followup, for the complete picture.

Doesn’t sound much like a typical morning for somebody with severe CFS and fibromyalgia? It’s mine, four mornings every week.

Let me introduce myself – I’m usually called Ricky, I’m 24, and I’ve had CFS and fibromyalgia for four years now.

I spent a month last year in a rehabilitation hospital – Cedar Court. Following this stay I returned for three mornings a week as an outpatient. I also spent a further week there last December for a ‘top up’.

Why try it?

I’ve read Jacqui’s book ‘When I Am Weak’ about her experiences in ‘The Graden’ hospital with unsympathetic medical people. I’ve also heard of several other people who’ve had bad experiences in rehab hospitals and ended up sicker than when they started. So why take the risk? I’d tried everything else and it seemed like the only thing left to try. I’d been getting sicker for four years and, by 1998, I was at the point of being bedridden and unable to care for myself or live independently – I felt that I had to do something.

Beginnings

Before I agreed to go into the hospital, I made sure I had a pretty good idea of what to expect … I asked my doctor what would happen if I ‘crashed’, and received a clear and acceptable explanation. I had his assurance I could discharge myself at any time if I wasn’t happy with what was happening.

So, armed with these assurances, the phone numbers of good friends who could ‘rescue’ me if necessary, and lots of silly socks with which to proclaim my identity, I proceeded.

The first few days consisted of meeting all my doctors and therapists and getting assessed by them. In the process I managed to forget everybody’s names, and there were a lot of them to forget … I had a rheumatologist in charge of my case, a general doctor, two physiotherapists, an occupational therapist (OT), a dietician and a psychologist, not to mention the myriad of nurses and aides. Those days of getting assessed were truly exhausting, and it was a little tempting to run away, but I kept trying to remember that it all had to happen in order to set the program in motion.

Nobody, at any time, denied that I had a continuing and serious illness. My physios and OTs understood when I explained that the problem was not that I couldn’t do something as much as that doing it would send me into a crash – they didn’t relentlessly encourage me to do more. Yes, they were encouraging and positive, but they also reminded me that I’d have to do things again that afternoon and to make sure I didn’t wipe myself out in the morning.

After the first few days of being assessed, each day contained two sessions of physiotherapy, one of relaxation, and one of occupational therapy. These sessions were an hour long and, at the start, I spent most of each session lying down because I couldn’t sit for an hour at a time. I was also taken to and from each session in a wheelchair until I was able enough to walk there on my own.

Therapy

In addition to the above program, I saw a psychologist every second day. The psychologist, along with all the others, believed that CFS and fibromyalgia were real and physical disorders. These sessions with the psychologist helped me deal with issues that the diseases caused – such as depression, stress, coping with pain, and so on. I did find this useful, especially in dealing with the issues that just being in hospital caused. For example, the few times I came across people who I felt weren’t supportive, the psychologist helped me plan ways to talk to them and straighten out the communication difficulties.

Physiotherapy started off with very gentle exercises while lying on a mat. For example, one of the exercises was to contract my stomach muscles while lying on my back – I started off managing to hold the muscles tremblingly taut for 3 seconds. Another exercise was on a ‘Kinetron’ machine, like a stepping machine you used while sitting down; on my first day I managed just eight steps at the lowest resistance.

There were relaxation classes to help people deal with the stresses of chronic pain and illness. When I complained that the imagery in the classes ‘didn’t work for me’, the wonderful staff made me a personalised relaxation tape I could use in my room instead! I still use it to help me get to sleep for my afternoon rest.

For occupational therapy, I worked in a specially designed woodworking area. It brought back memories of primary school and was the highlight of each day! The area was constructed so people could use the benches sitting or standing, and the carpenter who worked in there was a marvel at matching abilities to projects. During my month, I designed and slowly constructed a slope board that I still use to prop my books on to make reading easier.

Much to my relief, the kitchen people were great about my very restricted diet (no dairy, no gluten, no eggs, no MSG, no caffeine, no preservatives). They gave me the regular menus to choose from, but said if I wanted something different to just turn it over and write a note on the back! The few times I accidentally ordered something that had a forbidden food in it, they came and told me instead of just feeding it to me. I honestly can’t say enough wonderful things about them.

Of course, not everybody was brilliant. A few of the physio aides who didn’t know my case specifically were ‘too encouraging’ – they’d keep encouraging me to do more when I was working at my limits and reminding myself not to over-do it. But they also shut up when I asked them to. To have everybody being perfect all of the time is too much to ask.

Improvements!

When I arrived at Cedar Court, they provided a wheelchair because I was unable to walk the 80 metres from the front door to my room. Four months later, I was able to walk 20 minutes around the block!

The frustrating thing is that I don’t know why it helped. I think it was one of those situations where the combination of things just really works. I don’t think any ONE of the parts would have done anything, but together they did. One of the ingredients was the medical personnel at the hospital knowing about CFS/fibromyalgia, so I felt secure that if I did crash they could deal with it.

The other major ingredients were lots of monitoring and very small increases in the amount of exercise I did each session. The physios encouraged me to literally do one or two steps more, or ten seconds more, of each exercise. And they were there beside me twice every day to adjust the amount and intensity of the exercises. There is a gap between ‘amount you need to do to increase your capabilities’ and ‘amount you can do before you crash’ – it’s just really really tiny! I don’t think there’s any chance I could have stayed in that gap long enough to improve without the in-patient support.

For me, when I’m in a more acute phase of the CFS or when there’s stress around, that magical gap disappears altogether. At these times I can’t do anything to control my health and I’m crashing. When I’m in a slightly more fibromyalgia-ish phase (ie, when the pain gets to be more of a problem than the fatigue) and when I’m in a less acute phase, that gap is there. The healthier I am, the bigger the gap is.

Afterwards

Now, nearly a year after I first went in to Cedar Court, I’m living by myself in a one-bedroom apartment in Carlton. I manage nearly all my own cooking and shopping, with friends helping a few nights a week. The council’s home help comes in to do the vacuuming and other heavy chores on Tuesdays and Fridays, but I do most of the washing up and tidying myself. I adore living on my own, being able to do things when and how I want – including kicking visitors out and going to bed when I’m too exhausted to entertain them.

I’m still very sick, but I’m also very able. The difference in quality of life between living in the back bedroom at my parents’ house and living in my own apartment is immense. Cedar Court was incredibly hard work, but it was also the most useful thing I’ve done for myself in the four years I’ve been sick. If my rheumatologist thought I needed to go back there, I’d have no hesitation at all.

Please also read the followup article Experiences in a rehab hospital: The Followup, for the complete picture.

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This article was originally published at Exercise & CFS: Experiences In A Rehabilitation Hospital and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

It took four years for me to be given a diagnosis of CFS. This is a piece I wrote a few years ago describing what it felt like to live with an undiagnosed condition.

I cried a lot last week. I cried on the tram. At the checkout counter of the local supermarket. At the dentists. Until two years ago I’d never cried in front of another person, but now I regularly expose trams full of Melbourne commuters to my tears.

I can go for weeks without crying at all but last week my emotions were bubbling too close to the surface. The most I could do was to cover my face and try to hide my tears from the curious, grey-suited commuters sitting opposite me. I was crying with overwhelming feelings of sadness, frustration, anger and (worst of all), self pity. The other people on the tram were going to work. I was going to the doctor’s.

I feel ashamed writing this because you must be thinking that I have a terrible illness and that I’m struggling for my life. The problem is that I don’t know what I have- it’s an undiagnosed medical condition. Possibly an unusual type of chronic fatigue syndrome or a depressive mood disorder. Then again, maybe not. And when you don’t know what you’ve got, you don’t know where it’s leading you, and you don’t know when it will end.

Two years ago, I suddenly stopped sleeping. I was in America studying at a mid-Western university and had just been to a Martin Luther King Day service at the local Baptist church. That night I couldn’t sleep; my brain was agitated and in overdrive, thoughts ran screaming through my head. The next morning as I struggled to get to my classes I thought I must have had a bad reaction to some white wine I’d had to drink the night before.

Unfortunately this wasn’t the case and over the next six months I had debilitating insomnia. I would finish up most nights on the couch in my living room watching terrible American early morning programs in a desperate effort to get back to sleep.

I was so frustrated and confused about what was happening to me and resented friend’s suggestions that I should get counselling or just try to relax. “I am relaxed,” I would say through clenched teeth, “I just can’t sleep!”

I returned home to Australia and started to feel not only exhausted and lethargic but a strange heavy, foggy feeling inside my head. I find it hard to explain what this feels like but cast your mind back to the worst hang-over you’ve ever experienced. Now, on top of this, imagine that someone had wrapped two bricks inside a doona and stuffed them inside your head. The muscles around your eyes ache, your head is heavy and pounding and it hurts to keep your eyes open. Top this up with a dose of exhaustion and you’ve got a pretty good idea of what it feels like to live inside my body!

I expend most of my energy going to doctor and being put on round after round of anti-depressant medication. “But I’m not depressed,” I say “I’m just so tired and I can’t do anything.” “But you’re crying,” say the doctors, “you must be depressed.” The doctors argue that my depression causes fatigue and I argue the opposite- that my fatigue causes depression. They’re caring but patronising, and I long for someone to take me seriously. I want to scream at them “I’m not an idiot! I’m smart and motivated! You didn’t know me before I got sick- I was a ‘somebody’ then!’

Friends and family who can work, or read or go for a hit of tennis tell me that I’ll be better soon, that one day this will be just a memory. They say, “You won’t sleep if you worry about it- just stop worrying.” Or, “what you need to do is to try and go to work, then you’ll be so exhausted you’ll sleep.” Walking along the beach with me one day my father looked out at some fisherman fishing off the jetty. “That’s what you need to do,” he said, “some fishing. It’d be really relaxing for you.” “But dad,” I protested, “I’m a vegetarian!” Unfazed, he replied, “that doesn’t matter, just fish without the hook.”

I go to alternative health practitioners who tell me I have a small problem and that I’ll be better in about five days if I take the herb they recommend. Many, many ‘five day’s and thousands of dollars later it becomes easy to be cynical about sudden cures. I have to try and find the balance between hoping that something will work but feeling crushed by disappointment when it doesn’t, and being so bitter and cynical about treatments that I don’t open myself up to trying them.

I try to stay positive and not doubt myself, but I long to meet someone else who experiences the physical symptoms that I do. I want to have a name for what I have so I can find out about other people who have it. I want to feel like I have a ‘real’ illness and that I’m not just making all of this up in some bizarre subconscious effort to get attention or to be able to drop out of life.

It’s become easier to sink into depression over the last few months. I always thought of grief as something you feel when someone dies, but I’m not grieving the loss of another person, I’m in grief for the life I’ve lost and the vital energetic person I used to be.

I used to be so active. I had so many plans for my life. I wanted every task finished ten minutes before I started it. In my 21st birthday speech my best friend joked that I would be reading a book, brushing my teeth, and practicing piano simultaneously in order to make maximum use of my time. To help me cope with hours of enforced rest and two years out of the work force I have to rethink this way of life. This is a difficult thing to do because these patterns of activity and achievement are part of my philosophy of life. I think that time spent relaxing is wasted time. It’s really difficult to see that, for me, spending time not achieving is an achievement in itself.

As hard as this process is, there are certainly rewards. I now think less and feel more. I’m less likely to make harsh judgements about other people and more likely to feel empathy for their problems. I try to ask people how they feel rather than telling them how I think they feel. I appreciate the beauty of the Fitzroy Oval against the backdrop of the city lights as I walk around the oval at sunset. I lie on the floor of my living room and do nothing but listen to the sounds of the birds outside and the voices of people walking by.

I treasure these moments of peace and acceptance because they are rare and hard won. The uncertainly and self-doubt of living with my un-named illness never really leaves me and for the first time in fifteen years I pray to the blurry, half-formed concept of God that I left behind with Sr Margaret-Mary in Year 8 religious education class. I pray for faith and acceptance. For humility and patience. But most of all I pray, in a very childish way, that God will make me better.

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This article was originally published at Fishing Without A Hook and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

The house is on the bank of the river.

The river is in flood.

Each morning, when I wake up, I look out the window and the river is a little higher.

First, I put rocks on the banks of the river. It kept out the water but the river kept rising.

Next, I put sand-bags behind the rocks. It kept out the water but the river kept rising.

Finally, I put concrete over the sand-bags. It kept out the water but the river kept rising.

This morning, the river has risen again. This morning I have nothing left to try.

Already I see the river lapping over the top of the concrete.

The house is my body, the river my disease.

Today, my house will be washed away.

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This article was originally published at Holding Action and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

• Go on long bike rides and feel the wind in my hair
• Visit some friends who live a few hours drive away – too far to visit now.
• Eat fish and chips, and pizza, and sugary stuff.
• Run! Just because I could.
• Go see the Rocky Horror Picture Show which starts at the unfriendly hour of midnight when it’s on.
• Drive myself down to my parents’ beach house and go walking along the beach for miles and miles.
• Go to work with Thorfinn or somebody and spend an entire day there doing useful stuff like beta-testing or bugfixing, just because I could. I’ve never had a “real” full-time job to go to.
• Go out nightclubbing with my friends when they do, just to see what they get up to each week.
• Do some really complicated programming, feeling it stretching my brain.
• Get up early and go swimming laps, 50 every morning, to feel the strength and endurance in my body.

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This article was originally published at Well For A Week … and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

The preceding parts of the conversation had been unremarkable. The usual small talk as he helped me fill out the university enrolment forms, until he asked when I’d had my accident and I replied that I hadn’t had one. I guess he thought that breaking your back was the only way to end up in a wheelchair.

Not that that particular young man was unusual, except in voicing his thought where most stayed silent. A young and healthy-looking twenty-something female in a wheelchair is always assumed to be paralysed.

I reeled off the rest of my much-rehearsed explanation to him, “I’m not paralysed, I just have a disease that makes me weak and means I get tired quick when I have to stand up. Just pretend I’m a ninety-year-old woman and it’ll make more sense.” He looked relieved that I hadn’t taken offence, obediently grinning at my joke. I moved on to the next table, hoping the whole university enrollment wouldn’t take too long this year.

Not all people who use wheelchairs have had a spinal cord injury. Not all people who use wheelchairs, use wheelchairs all the time. Not all people who use wheelchairs are unable to walk.

Wheelchairs are simply devices that people use because walking is difficult, painful, or impossible over short or long distances. Have you ever been in hospital and put in a wheelchair because you were weak after an operation, or woozy from pain-killers? Those are two good reasons that a wheelchair can be used.

There are disorders, including MS and CFS, which have severe fatigue as a symptom. A person with one of these disorders may walk when they’re at home or only going a short distance, but use a wheelchair for long trips or when they aren’t sure how much walking will be involved. Many elderly people also use wheelchairs like this.

Those with severe back or leg trouble may be able to walk only with extreme pain. Using a wheelchair may mean that they can around more easily, get out of the house more often, or even reduce their level of pain medications. I have several friends who use a wheelchair primarily because they are in pain, and they have particular trouble: One woman has a disorder that makes it extremely painful for anything to touch her legs, and was forced to build a mental cage to go around her legs and feet when in her wheelchair because people ran into her so often, assuming that she was paralysed and had no feeling in her feet.

With other disabilities, people may loose their balance and their sense of where their limbs are in relation to the rest of them. These people may be able to walk, but only with a lot of concentration and effort and only on fairly flat ground. They may use a wheelchair when they want to go out on a fun outing and not have to concentrate on where to put every footstep.

I have a friend with cerebral palsy who is able to walk, but it takes concentration and a little luck for him not to fall over frequently. He uses a wheelchair to get around the city, especially when there are lots of people around, because it’s quicker and easier and he’d rather use his energy for useful things instead of just for walking.

The first time my own friends took me around the city in my new wheelchair I was amazed to notice shop windows, buildings, signs, and a myriad of other things that I’d never noticed in the city before. Eventually I realised that every other time I’ve been in the city I’m too busy figuring out where to put my feet and where the next safe place to rest is, that I never get to see anything but the ground in front of me!

So next time you see a person using a wheelchair, remember that you probably have very little idea of why they’re using it. You can’t judge what somebody feels or what they are capable of just by the fact that they are sitting down.

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This article was originally published at But, Aren’t You Paralysed? and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

1. If I try to do something at a level above the one where I am functioning at that point in time, I will overdo it and crash back to a lower level.
2. At all of these levels but especially the lower ones, even some of the things I can “do” I may only be able to do for a very short period of time – only a few minutes at the extreme of the range.
3. I spend most of my time at level 2-3, and almost all of it between 1-4. Hitting level 5 is usually forced and results in a crash, as when I have to make it to a doctor’s appointment.

Level 1

Energy for survival and healing only. Must conserve every ounce of energy possible.

Activities possible at this level:

• Lying flat in bed
• Listening to radio/tape (probably won’t take much in)
• Drinking/eating (probably can’t decide what I want though without prompting)

Level 2

Energy for survivial, healing and keeping the mind occupied.

Activities possible at this level:

• Lying in bed with pillows under head.
• Listening to radio/tape and taking it in
• Conversation with people who I know (low key)
• Eating/drinking (able to decide what I want)
• Using the net for short periods.
• Using the powerchair for short periods.

Level 3

Energy for survivial, healing and keeping the mind occupied and some physical activities.

Activities possible at this level:

• As level 2 plus these:
• Walking to the bathroom with help.
• Conversing with people I don’t know so well
• Possibly reading easy/familiar stuff
• Being given a bed-bath
• Using the net for web pages

Level 4

Energy for survivial, healing and keeping the mind occupied and a little more physical activities than level 2.

Activities possible at this level:

• As level 3 plus:
• Walking to the bathroom alone
• Using powerchair for longer periods (possibly outside).
• Socializing with anybody
• Reading most stuff
• Using the net for programming
• Having a shower (assisted greatly)

Level 5

A little spare energy! Quite rare for me to reach this state currently.

Activities possible at this level:

• As level 4 plus:
• Using powerchair outside
• Using wheelchair taxi to go somewhere
• Walking all around house
• Reading anything

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This article was originally published at Functionality Levels For Ricky, Start of 2003 and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.

I’m sitting in the bath, which is the one place which causes the pain to fade for a time. I think about what parts of the body I’d trade to be well. Would I lose a leg? An arm? The sight of my right eye?

And I think again how I envy Stephen Hawking. His body is failing him, but he still has his mind.
Or disabled athletes.

I know pain. I know that the pain from a back injury affects everything, or the despair and confusion of a psychiatric illness affects everything…

But I have physical pain, physical limitations, damaged systemic functions in every system, and brainfuzz, and emotional ‘lability’, and … it’s everything.

My mother once told me that ‘at least you don’t have to worry that you might kill your own child’. Um. Mum? One of the reasons I refuse to have children is the emotional lability. I could. I’d get tireder, and tireder, and less and less able to control the mood swings. And one day I’d snap out of a mood swing and … well. I get suicidal anyway. Imagine how you’d feel when Dancer called to say we were both dead.

I can’t think straight. I want to think straight. I want to be able to do something. Anything. Give me a physical illness, but leave my mind clear. Give me a mental illness, but leave my body clear.

Let me be like Stephen Hawking. Let me be like a disabled athlete.

Give me something I can do.

Please.

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This article was originally published at Envying Stephen Hawking and is copyright (C) Ricky Buchanan 2010. May be forwarded but do not republish without permission.